Stephen and Joan Chinnery have five beautiful children. Their youngest one, Ian, was born in June of 1998, and diagnosed with several different eye anomilies (depending on which Doctor you talk to). They live in Seattle Washington, with their family.
Stephen and Joan found our little world when their son Ian was just a newborn. Like most families they turned to the internet for answers and found us *S*.
It is always a sad time to help new parents cope with a newborn who has a visual problem, but exhilarating to help calm them, teach them, and let them know its not the end of the world.
It's just the beginning of one
****a precious one****.
Stephen and Joan tell their inital story, including lots of prayers, and a great deal of faith.
Please read on....................
Ian Alexander Chinnery was born very quickly at home on June 3rd 1998 at 3:38 am. His birth was normal and uneventful except that he arrived so quickly that Daddy did the honors in delivering the baby. Our midwife arrived when Ian was only 5 minutes old. Ian was 9 lb. and 21 ½ inches
long at birth. He is our second son and fifth child.
Just after his birth I noticed that his left eye was not opening as much as the right eye and it appeared to be much smaller. Also, there was blood in the white of his eyes which was much brighter and redder in the left eye than the right. We discussed this with the midwife that morning and she
mentioned that it may be just trauma from the birth.
At 7 days old Ian saw a Pediatric Ophthalmologist (PO). He wanted to do immediate surgery to remove a cataract and explore the inside of his eye. We were not impressed with his ‘bedside manner’ and asked for a second opinion. Reluctantly he consented to a second opinion by a cataract
specialist who also had training in pediatrics.
We searched the PO’s diagnosis of Ian for specifics on his condition that we might begin to pray about. We prayed on the way home and that night we spent most of the evening searching the Internet for information on infant eyes and their development. At about 3am, we gave up the search and prayed and prayed and asked specifically for a healing for Ian and his
The next day, we had the second opinion. Ian was only 8 days old. This ophthalmologist’s ‘bedside manner’ was much gentler as he explained how the eye is believed to form. He surmised that something had happened to cause Ian’s left eye to stop developing at about 10-12 weeks gestation. We asked specifically about the cataract that the first PO had wanted to surgically remove. He had a second look in his eye and concluded that there was some hazing in his eye but that it was not significant enough to call it a cataract. Then he mentioned that the most damage was to his retina in the back of his eye. He recommended that we see a retinologist and made an special call to a fellow ophthalmologist who agreed to see us
immediately since Ian’s eyes were already dilated.
Two hours later we saw a retinologist in Seattle. He was exceedingly gentle and kind to both Ian and ourselves. After looking in Ian’s eyes for a very short time he put down his equipment and looked at us and said “Well, if he was my son, I’d do nothing!” He went on to explain that Ian had a condition called Persistent Hyperplastic of the Primary Vitreous (PHPV). This is a condition that is common in microphthalmic (small) eyes. It refers to a broad range of malformations and conditions which may or may not be present in each case. Then in a most unprecedented way he offered us his entire folder on PHPV and asked us to return it to him after
we had read and copied any articles we needed.
We continued to pray for Ian, the correction of the PHPV and “cataract”, and for wisdom and strength for us. We also sent out requests to family and friends asking specifically for them to pray for Ian. After having searched the Internet and read about some people’s experiences (Diann’s website) with their children, we came to the conclusion that we need to have a great relationship with our PO. We asked our Primary Care
Physician to refer us to yet another PO.
At 16 days old, Ian was seen by a third PO whose ‘bedside manner’ was refreshingly gentle to both Ian and ourselves. He made his diagnosis and also asked a retinologist to review Ian’s eye. They took ultrasound pictures of his eye and made long and detailed remarks about his
Their diagnosis was that Ian had the following PHPV symptoms: pulsing blood still in the vitreous (jelly-like) part of the eyeball; his retina was being pulled off the optic nerve by the blood in the vitreous; his retina had a fold and a scar on it; and he had not developed a macula (the part of the eye responsible for clear vision). He measured the iris (colored) part of his eyes and they were 10mm on the right and 6mm on the left. They explained that it would be expected that as Ian grows he would probably lose the limited to useless vision he had in the left eye! We asked specifically about the cataract that the first PO had wanted to do surgery on but were told that there was no cataract in his eye (Praise God!). Finally they talked to us about the fact that children who only have one eye for vision lead very full lives and that he would learn to compensate very well for that condition. Then, they asked for a recheck in
That night we went home rejoicing and spread the news with everyone we knew that Ian had been healed of the cataract that was first diagnosed. The next two months were very long. We continued to pray for Ian and expected God to hear our prayers and heal Ian. We prayed in faith and encouraged others to do the same. At 6 weeks of age, we took Ian into a special meeting with all the elders and pastors of our church to have a
special prayer service for him.
The day before our 2 month appointment a friend came over to our house and we again had a prayer service for Ian and laid hands on him and blessed him and asked God to heal him. Many of our friends joined us in fasting and praying for Ian. Finally, our 2 month appointment arrived. We were very anxious but excited to hear the great news that God had healed
our little Ian.
The PO was unsettled at this appointment as the conditions he was seeing in Ian’s eye were not what he was expecting. Ian’s eye was showing progress and recovery as he was using it more and opening it more daily. The PO had the following findings: His cataract was gone! The PHPV was gone! The retina was flattening out (instead of detaching)! His pupil was dilating and contracting and therefore responding to light - which means that he could see something (we’re not sure what or how well he could see) - so he is not blind! The boney structure of the eye was growing so he would not need a conformer to help it to grow! With all this miraculous progress, we sent out e-mail and messages to all who were praying for Ian to let them know that our prayers were heard and that Ian was being healed. We asked for continued prayer as our next appointment was to see the retinologist in a month and then return to the PO’s office again in
The next month, at 3 months old and Ian had an appointment with the retinologist. The retinologist who had seen Ian at the first appointment (3 months earlier) was on vacation so we saw his partner. This retinologist wanted to know why we were there to see him! We explained that he had a small left eye and that we wanted his condition to be rechecked. This appointment was most encouraging. His observations were that Ian had no sign of retinal detachment, he had no cataract, he had clear lenses, his macula was normal in position, growth, and development, and that his left iris had grown in diameter to 8.5 mm while his right had grown to 11.5 mm. We were ecstatic! We sent out e-mail and messages again thanking people for praying for Ian and praising God for healing
our son Ian.
One month later, we saw our PO again who finally conceded this time that Ian definitely had vision in his left eye. He also informed us that he would not need a conformer at this time as his eye was big enough to encourage the surrounding facial structure to grow normally.
Today Ian is seven months old - he is doing great. The left eye still looks smaller than the right eye yet you’d swear he is looking at you with both eyes. Last month the PO was encouraging and suggested that Ian would have enough vision to identify the number of fingers in front of him and motion of other large objects. We are so thankful to God for answering our prayers and to our Primary Care Physician - a naturopath - Dr. M. Poulos who has stuck with us and never balked at all the specialist that we insisted on seeing. Our message to all is to have faith and demand information - we can’t imagine how things would have been if we had let the first PO butcher out little babies eyes! Feel free to question everything
you are told. Love to all Stephen & Joan
There are a few different ways to contact Stephen and Joan.
Try through theirPersonal ICQ page,or by regular e-mail.
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